recovery isn't a straight line

[kcharris]

I have FND and people in my life have been treating it like a minor inconvenience when I'am in pain and discomfort constantly. people have been comparing my chronic pain to gym injuries or pulled muscles. does anyone have any advice on talking to people like this ?

[MONIREN]

That is sad, but it is constant. Hardly anyone asks why? Some even say staying positive will help. Even neurologist thought I should control my symptoms. So misunderstood. I've found more comfort and help here than through family and friends. I hope you can cope. Wishing you all the best. Take care. Moni

[Westie_1]

Hi kcharris, I find that some family and friends think we are just fine.. if only if they knew what we went through they may think again. I am sorry you have this at such a young age. I hope you find peace and learn to accept it, you will channel your time and energy and will learn for yourself how to cope best with it. It does not matter what anyone says to us as they are not going through it we know the truth. Please stay as strong as you can sending you a huge hug to you Xxx

[Brokendeer]

Hi, trust me when I say even 14 yrs on my family still say they understand my motor FND condition and limitations - when it is obvious they do not.

In some ways it is not important for them to understand, just accept I have different issues and limitations than them and most `normal' people.

Work on the basis that if you need their help with something, just very clearly explain what you need and that at that particular time you are unable to do the task yourself, due to your medical condition affecting your normal functions. Remember EVERYONE needs help sometimes, some more than others- remind them of this. Though usually friends/family will help and feel good about that and you get a task done, win, win!

FND is all about a physical change in the brain caused by some incident in the past upsetting the balance of chemicals/functions and not resetting to previous levels. The FND brain loses the ability to translate nervous system signals properly, quickly or sometimes at all. The brain fails to prioritise key functions and becomes overloaded, causing abnormal body system responses.

This is not `all in the mind' and it certainly is not explainable to anyone without FND . It is a condition that makes no sense to the person affected, especially as often they have totally different symptoms to other FND sufferers. Plus, their version generally does not match any Neuro medical theories given either?

FND is as common as Multiple Sclerosis (MS) and Parkinson's Disease and just because the majority of people have never heard of FND, it does not mean it does not exist! Even the Medical Professionals below FND Specialist have no clue what it is or how to support it.

This is why I say to non-family `it is a brain condition affecting my movement, bit like MS' - no more detail than that and most accept it, as they have heard of MS.

Crucially you must learn to pace yourself, allow your brain enough time to sort of catch up with things asked of your mind and body daily. Space out tasks or activities as much as possible to allow small downtime periods to clear nervous system signal back logs. Do not panic about not doing something, try again another time. Do not listen to others applying pressure to go at `normal' speed in `normal' ways - you know your body best, your triggers, your needs and abilities so only you can find the solution to overcome daily nervous system problems and succeed in busting any acquired limits.

Look for the calm in the Storm!

[arcangels1 in reply to Brokendeer]

Thank you for putting into words this description of FND. Well said Brokendeer.

[Boeingbabe]

Get checked for lyme disease +

[Nevergiveup555]

It is difficult enough for us experiencing these strange symptoms to understand them but with some sound knowledge we can start to grasp this unusual disorder. Those (including medical professionals) who have neither experience or knowledge are simply trying (or not) to compare or form a concept of what is going on, to the closest thing they can relate to, which is likely an impossible probability of anything accurate. I save myself the frustration by only sharing with those who know me, trust and care about me.